Im a 26 year old female, who should hold the job title of professional patient these days. Although that is a pretty low paid job.
Really, I am just a regular 20 something person trying to find my way in life, whilst fighting a body that seems intent on trying to kill me.

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Monday, October 01, 2012

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Hopefully a quick update as I dont really have much to update.

A quick backtrack as my video was awful. Last week I ended up back in surgery, less than a week after my last one. Turns out the area of trachea above my trach has now collapsed. This means that I have once again had to ditch the speaking valve, making speaking a lot harder. You would be surprised at the amount of times you want to talk, when your hands are tied. To speak without a speaking valve, I have to block the hole on the front of my trach, while I speak, then uncover it to breathe in again. This means, when your standing washing dishes, and someone asks you something, you can answer. Or if you touch something hot and shout ouch, the sound dosnt come out. It gets frustrating. Although I am once again having some issues below the trach, so often I can get short sentences out without covering it. As they are short sentences, I tend to sound like that kid of the Malcom in the middle show.

Anyway. I am seeing my surgeon this week to discuss where we are up to and where we go from here. I spoke earestly in a email to him. There is a minimum of 2 years until the research for the surgery that may help me will be availble. Right now, with both ends of my trachea collapsing inwards, it would be a miracle at this rate if I make it to the 1 year mark, never mind the 2 year. I am getting tired, tired of surgery, tired of pain, tired of being tired. I think perhaps its time to review where we go now.

Half the time these days, the thought of leaving the house, makes me want to cry at the effort it takes. I have more bad nights than I do good nights. And today, virtually every breath I have taken has made a squeaking sound. A squeaking sound, like a squeaking toy, is from the air trying to get through a small gap. My lungs take twice as much effort to pull that breath in and out. It is exhausting.

And I know the lungs cant hurt as they have no nerve in them, but I am getting a heck of a lot of pain along the scar site from my lung surgery. To the point, where today, I even asked mum to give me some physio on that side to help it.

I have a feeling that this appointment, is probably going to be one of the hardest appointments I have had to face.

In other news, well not really other as its on the same tracks, but the world leading surgeon for tracheal transplants, the one who is supposed to have been making leaps and bounds and fixing my type of issues, was arrested last week for fraud. So yup, thats going to suck. Though, it does now mean, that I am definitely under the worlds leading surgeon for tracheal surgery.

I am doing everything right, I am in the best place and I have the best people caring for me. Other than that, lets just play on luck.

I have my niece here tonight, so some quality time and cuddles might be a good option.

2 comments:

Hi KIm, hope you enjoyed the evening with your niece.Is a trachea transplant something that has been done, successfully, before? and if so, is it just a matter of waiting and finding a match? . . . This must be so frustrating for you. Although you do sound a bit brighter than last week.I hope you sleep well tonight and have renewed energy tomorrow, with love x

Tracheal transplant, is something that is in the pipe work. A few have been done, but the success rate is pretty low. Within the UK, it cant be done without getting permission as it has not been granted as a valid procedure here.

To get permission, you have to have all kinds of people agree to it. Within the team of medical staff who specalise with tracheal issue, they all know me and they know of my issue. However, it goes towards the whole working for the grater good. They dont want to risk putting me forward for such surgery, partly in relation to the low success rate, but also because I have so many medical complications and dont react in the usual way, that the chances are, I will have issues with the surgery. If that were to happen, it could greatly slow down the process of the research, delaying things by years. There are many other people who this surgery can help and so it is not fair to risk slowing things down for them.

Its all kinda complex, but I will probobaly do an update on that in a few days.

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About Me

What can I say. This is me.
I used to be fairly interesting, with days constructed around training to become a nurse.
These days however, are a little less and interesting and yet a little harder to get through.
I still try to live life to the full, I was given the gift of a second chance via a Liver Transplant a few years back.
Now all that stands in my way is a failing airway and a few mental hiccups when my past tries to define my future.